AI Article Synopsis

  • Advancements in genome sequencing and evidence showing that families can handle predictive genetic information challenge the traditional consensus against testing when no immediate interventions are available.
  • The main argument against predictive testing focuses on the "right to an open future," suggesting that children’s future autonomy is compromised by decisions made for them during childhood.
  • The authors argue that the right to an open future should not be considered an absolute right, but rather one of many interests to balance, suggesting that predictive genetic testing is ethically acceptable if the benefits outweigh the risks, and they propose a new framework for evaluating children’s interests in these decisions.

Article Abstract

Professional consensus has traditionally discouraged predictive genetic testing when no childhood interventions can reduce future morbidity or mortality. However, advances in genome sequencing and accumulating evidence that children and families cope adequately with predictive genetic information have weakened this consensus. The primary argument remaining against testing appeals to children's "right to an open future." It claims that the autonomy of the future adult is violated when others make an irreversible choice to obtain or disclose predictive genetic information during childhood. We evaluate this argument and conclude that children's interest in an open future should not be understood as a right. Rather an open future is one significant interest to weigh against other important interests when evaluating decisions. Thus, predictive genetic testing is ethically permissible in principle, as long as the interests promoted outweigh potential harms. We conclude by offering an expanded model of children's interests that might be considered in such circumstances, and present two case analyses to illustrate how this framework better guides decisions about predictive genetic testing in pediatrics.

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Source
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6754817PMC
http://dx.doi.org/10.1038/s41436-019-0483-4DOI Listing

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